Monday, April 15, 2013

The Battle We Didn't Choose

The things I often end up writing about are spin-offs from thoughts I have while awake in the darkness of the wee hours of the morning, when I have nothing going on around me. Typically, the only things I hear are electronic sounds from the nurse’s station or snippets of conversation as people pass my door. There’s no interruption from someone taking my vital signs, a gaggle of doctors, the phone, or any other mundane detail. It’s just me and my thoughts. The more ‘normal’ times come from conversations with someone or a Facebook post that, for whatever reason, resonates with something I’ve been mulling over – probably in the dark between 3:00 and 5:30 am.

I want to share with you a video that was the impetus for this posting. It’s one of the hardest things I’ve watched, but I felt a kinship with the subject of the video even though I know that every case is different. Mine, by comparison must be a cake walk! The photographs as a subject of art, portray the feelings I have and deal with in a very raw but beautiful way. Photographer Angelo Merendino documents his wife, Jen's battle with breast cancer. The video discusses them, but the web site with the actual images is here. He also has a YouTube channel with a few other videos here.

7:45 a.m.. Lots of waiting. Take a
number. "Now serving number 8...
thank you!"
One of the overriding themes I’ve continued to wrestle with is how it seems that most people don’t want to acknowledge bad things that could potentially befall us. We use euphemisms or abbreviations lest we say the word and it takes root in us and we become afflicted! We refer to cancer as “the big C,” or say the word sotto voce, or perhaps we just say that someone is really sick. Mind you, I don’t really care to talk about unpleasantries any more than the next person, but just like death, this is part of life. Everyone has to deal with a crisis now and then and dancing around the issue doesn’t help the one going through it.

7:50 a.m... "Where again do you want
me to draw blood? Oh, that arm looks
wasted." Uh yeah, Three missed sticks,
a bruise, and a small hematoma. Try
the other arm, please. Honestly, I'm
not a drug's the chemo. Good
luck, Roxanne!
I’ve had to work through a few pretty difficult things over my 50-year life and dealing with cancer now is without a doubt, the hardest and most traumatic yet. The fallout – notwithstanding my hair! – has been extreme in a number of ways, but it has been easier to face because those people who have been through this and shared their experiences with me haven’t pulled any punches.  They’ve been pretty direct in telling me the truth. And the truth is rarely soft and wrapped in white satin. More often than not, it’s messy and it hurts, and it may be a tough pill to swallow. But, it’s the only medicine that will ultimately restore you.

My poor left arm! the picture didn't pick up the scars quite as
well as you can see them. It's a great conversatin piece though!

Facing the truth, we still have to make the choice of calling that glass either half-full or half-empty. The truth doesn’t change your attitude. Only you can do that and if you’ve read my postings, you know where I stand on that. The truth may make me cringe or cry or feel fear, but attitude can help me stand up, wipe the tears away, and put on a brave face. It can also kill you if you let it. It really is that important.

11:45 a.m. Numbing my spine for
some toxic chemical goodness.
Gives "feel the burn" a new
meaning, huh?
I’ve poked fun at the things I’ve dealt with since the prospect of having leukemia – a blood cancer – reared its ugly head. Humor is how I cope with the ugly truth of what’s happening.  I’ve been open and honest about my feelings of intense gratitude for the people that have and continue to come to my side. I’ve had a lot of laughs in spite of how I’ve felt and put on that best smile whenever I could. What I haven’t said a lot about is the stark, painful side of what cancer is all about.  Yeah, I’ve seen the movies and there’s something to be said about the dramatic license employed by Hollywood to sell tickets because the cool part about this whole thing is that the human spirit will win, even if the body dies. And that always makes for a good story. Seriously, though, no one wants to see real pain. No one wants to walk a mile in these shoes. It’s just too easy to whisper the word than say it out loud and acknowledge it's there.

11: 55 a.m. In nature, yellow is often
a color that tells a predator to find
something else to eat. Well, yellow
is the same color to tell people in a
 hospital that this is also dangerous
- chemo. Nice thought as it goes
directly into my spinal cord! Isn't
that special?!
I get it that it’s awkward and that those of us in the hospital bed don’t care to be reminded that we’re sick, but that elephant in the room isn’t going anywhere. Let’s recognize he’s there and let him move on. So, why talk about this rather dour subject? Well, I should say that first off, I’m absolutely not fishing for sympathy, but I think it’s important to know what this thing called cancer is all about. Again, thanks to Hollywood and maybe a friend of a friend of a friend, we have an idea of things like chemotherapy, radiation, hair loss, and surgery to remove tumors, but what most people don’t hear about is how the diagnosis stops your life in its tracks, the hassles with the insurance company, the prospect of financial ruin, the impact on family systems…and that’s before the patient actually hunkers down and starts dealing with the needles, IVs, and ports; the endless tests and samples required, the pills with names I can’t pronounce, and their side effects which I can pronounce (and the other meds, more of which I generally still can’t pronounce, that counter the side effects). Then there’s the hair loss, which although you know about and expect, is really still traumatic, especially for women; and there’s just the feeling really, really sick or too weak to walk across the room to the bathroom, the lethargy, the diarrhea, the nausea, the painful procedures like biopsies where they drill into your pelvis for a sample of marrow or cut off some flesh, or even drawing blood from the veins that have receded because of the chemo; there’s the weight fluctuations, and the food that otherwise would be delightful suddenly smells like sewage – another delightful side effect of the toxic chemical goodness.
12:05 pm - Mercifully, all done. This
was the last episode of that mini-series,
but there's more fun awaiting! And
seriously, does this chuck pad on my
 back make me look fat?
Again, I don’t want to elicit sympathy from anyone. It’s just what I deal with right now and the brave face often belies what I felt just an hour ago. My mom can tell you how bad it was during my first round of chemo where she had to don a yellow gown before she could come and I was barely able to stay conscious. Not a pretty picture, but it was an honest one. Today, I feel good and am at home. I check in with my family twice a day so they know I’m OK. I monitor my blood pressure, my temperature and weight and have a miniature pharmacy in my bathroom full of lovely antibiotics, antivirals, antacids, and some basic Tylenol. Tomorrow could be different.

My hope in all this is not that there's guilt imparted or that you treat me or any other person dealing with an illness differently, except rather with honesty and authenticity. What we all crave is what you take for granted, what we took for granted before we started our odyssey into our illness. We just need you to be you and sometimes that just means being there and holding our hand. And for the generous gift of your human touch, for staying with us over the long haul, we thank you.

This picture, very simply and eloquently captures the basic need of any of us. For for someone who is fighting a long-term illness, it's like an antibiotic. Photo credit - Angelo Merendino -

Be well, stay strong, and much love to you all.